Six Weeks to LIve... what do you do?

Here we are: the bottom line... Six weeks to live... Sounds crazy, huh? My life revolves around a medication that helps me be ME. It allows me to walk, live, participate in life. I have 3 treatments in the refrigerator. No refills. No doctor. I take my treatment about every 2 weeks. I have 6 weeks to live. At the end of that 6 weeks, I will still be here physically in this world, but my ability to live will have ended. This is a hard fact to swallow. This is REALITY. People say to me, " pray and everything will work out " yeah.. I pray, however, I am a realist and I know that unless I get into a Rheumy Dr. ASAP... Nothing will be OK in six weeks. My ability to live will not exist anymore. I will become solely dependent on those around me to take care of me and my babies. I am struggling to say the least. My pain on a level of 1 to 10 is about a 90. My mind is all over the place and I do not want to go back to that wheelchair. I won't... My struggle continues after seeing a Rheumy Dr. last week who contributes my joint pain to being FAT. I know that I need to lose MORE weight, but I am proud of the fact that I have lost an entire person. The removing of weight from ones joints does play an important role in feeling better. He wanted to entirely dismiss my medical condition because of weight. I left there feeling the lowest I have felt in a very long time. I am very active. I walk, I do yoga. Although I am not as active as I would like to be right now, it is due to my treatment failing... that being why I needed to see the Dr. for continued care. The biological meds that I have been taking, ie: treatment have enabled me to have my life back. Removing pain, swelling, and the mobility in my joints by shrinking the nodules in the joints much like chemo works with shrinking tumors. Same concept. Easiest way I can explain it. I will not go back to being that girl... I left her a long time ago and she is not welcomed here...

What you can not see in this picture is my legs are the sizes of tree trunks and propped up on two different stools because I could not bend my knees. I weighed about 369 lbs in this picture. I was still trying to be active and it was HELL. I have always pushed through until it was physically impossible which did happen... then I found Dr. Crayton. He was amazing, he listened to me, allowed me to be in charge of my health and participated in the solution. He cared. I am finding that those Dr.'s are few and far between... However, I will not settle. It is my LIFE we are discussing and trying to find a way allow me to LIVE it. The scary part is that I know what can happen in 6 weeks... You know.. the 6 six weeks I have to LIVE.

Some of you may be thinking... " wow, she is really over reacting on this one " Nope... I am not. The tragedy that I have lived through losing Jeff showed me how quickly life can change. I choose not to take the ability to live lightly... I get so sick of hearing people moan and groan about their lives... their spouses... their children... Did you ever stop and think about how much you HAVE.???? Today I do not take time for granted. Once it is spent, you can never ever get it back. Recently, Josh and I discussed him taking a job where he would be traveling about 2 weeks at a time. I will never tell him he can't do something... we do not operate that way. I only asked him to think of the time he will miss. The School functions he can not be at. The goodnights you can not get back. He made his own decision and we both firmly believe it is better to have little, and an abundance of time, than vice versa. I love that all our heartbeats are under one roof every night. It makes me smile... Even if it means I can not go buy the greatest and best new Coach bag, or have steak 3 days a week... I do not care. I am rich in a multitude of ways that have nothing to do with monetary items.

This guy... this guy right here... He amazes me in every way. He loves me even when I can't love myself. Here is what has changed for me because of Josh... I have learned how to " chill " out... so to speak... I spend the weekends in my jammies, unless we go out obviously. I never did that before, I used to get up and get dressed regardless. I have learned how to somewhat sit still and just let things be. I have learned how to let others HELP me... and he does it with love and genuine compassion. He makes me laugh and sometimes, that is all you can do... Laugh... The kids amaze me every day... It is quite chaotic at our house. We are usually running in several directions... getting one child something they need, or attending a school production for one or all of them at 2 different schools. It gets pretty interesting, but I love love love love love love it !!! I enjoy this time of year, the end of the school year when the kids have tons of things they are involved with and have practiced hard for their performances. They make me smile and move my soul like no other. So, you see? Having 6 weeks to live in unacceptable. I won't have it. I will conquer this... somehow/ someway. I hope you can take a minute an appreciate what you have in your world. I try every day to be appreciative of the things that I have and the people that support me. I am ready for Thunder Beach. We will be heading out of Friday and I can not wait... I am actually already their in spirit, just had the physically hang back to take of issues till Friday... ha ha ha The release will be so awesome and I get some quality one on one with my husband... That is the best part... The gravy if you will... Take care of you and yours. If you don't nobody else will... Much love to you all... Love the one you are with... Always say I love you... Never be unkind.. MWAH From our house in the boonies to yours... Love the gang of H's and Mr. and Mrs. Ptak... ( love that )

Shit Creek Survivor !!!

Today I am blessed with an amazing husband who would move mountains for me... Give me the world on a silver platter if he could... mostly he is just here... here for me when I need a shoulder to cry on, here for me when I laugh and he laughs at me, or with me. I have found that " HERE " is better than anything I could ever want materialistically... " HERE " is where I want him the most. I am so glad that we and our pieces of soul found each other because I need him and it is nice to become "one" with him... I am a lucky girl !!! I have had a lot of turmoil running around inside my mind lately. It is by far the scariest place I have ever been. I try my damndest to stay out of my own head because I usually end up in my own way. I have disappointed myself with some of my actions recently. I am woman enough to own up to them. My attitude has been kind of shitty. No other way to put it. We downsized in vehicles to meet some financial goals and I have acted like a BRAT. No other way to put it. A BRAT !!! So, just like this quote says... I get into my head and then I shut down. I don't talk, I don't feel, I don't eat, I don't do anything but what has to be done. My inner demons are cruel and they don't forgive easily. I will usually apologize for my actions and I want so badly to say what is in my head, but I know better. Hence the blog... It has become easier for me to get out of my head by writing what I feel here. I liked me better when I had felt sooooo much that I was numb. I did not have to feel... uugghhhhh !!! I Still struggle with sleep. It comes in waves... When I have a lot going on in my head, then I most likely will not be sleeping. I may be trying, but it's not a restful sleep. It's a sucky sleep that drains you emotionally because you go over and over and over in your head a million times what is going on and the same outcome happens every time. No solutions. I try and let go and free my mind, but that was when I was meditating and practicing that in my every day affairs. I think that may be in the near future for me again. I seemed more at peace when I could just breathe through the emotions. I had less panic attacks and more control of my emotions. I deal with physical pain on a level most of you will never have to feel. I feel less than because I am becoming more dependent on those around me. Pain does demand to be felt. The physical pain that I am in is 24 hrs a day 7 days a week. Do I hole up in the bed? Hell no.. I GET UP I get the kids to school... I clean house. I walk... I tend to the chickens. I make dinner, I tend to others needs first. That is my nature. However, when you can't raise the glass to your face and take a sip out of your cup, that sucks. No lie. My right hand used to be my bad hand. Then some bitch hit me head on in November and my left hand has serious damage. I have been seeing a hand specialist and to no avail there has been NO relief in 5 months. I can't turn my left hand over, I can't hold anything in it, I need surgery to fix it. yeah right? !!! I do not have time for that; I have a special needs child... who is going to take care of him and me? oh... you mean I should let Josh help...??? that would be the logical solution, however, once again... in my head... I become a burden.. who in the hell wants to be a burden? Not me... Josh will argue this and say I am not a burden, it is just my feelings... I will be seeing a new Dr. at the end of the month, this is yet another scary venture for me. Starting over with Doctor's.... I am going in with an open mind and an open heart... Hopeful for some results.. Life here in the boonies is crazy, chaotic and AMAZING. We were looking for a normal, but decided normal was over rated. We like it crazy. The kids are settling in and we have some GRAND plans for the summer coming up. Easter has come and gone and it was a good day with lots of memories... Always say I love you, love the one you are with, never ever be unkind... Much love and lots of hugs sent to you from our family to yours... Love always, The gang of H's and Mr and Mrs Ptak